Wednesday, January 4, 2012

a glimpse at the plan

We talked with the doctors' nurse today.

She read from his notes exactly.

This is what I heard: 

We will start felbatol in combination with clobazam and depakote.
The team does not feel the diet is working, so we can begin to wean him off.
If felbatol fails, we can do IV steroids or the Vagus Nerve Stimulator Implant (VNS).

We have a lot of questions and concerns.  We will meet with him tomorrow afternoon to get some clarification as well as their thinking. 

I love the thought of getting off of this diet, but I'm scared. 

I'm a little scared about the whole thing. 

We are anxious to ask questions tomorrow.

We are so thankful for all of you who prayed for us today.

Here are some answered prayers:
~ we get to meet with the doctor tomorrow (the fact that he has an open time slot is amazing)
~ Ben did not have a tonic clonic (grand mal) seizure today
~ he is champ at doing hard things - yesterday he had his tonic clonic seizure during his dinner but he had only eaten the protein and carb portions.  So as soon as he was coherent, he had to drink all of his cream.  Despite feeling yucky and tired and frustrated, he still chooses to do what we ask

Please pray that we will have clarity when asking questions tomorrow and that we will really understand all that is said to us.

"Peace I leave with you;
my peace I give to you.
I do not give to you as the world gives.
Do not let your hearts be troubled
and do not be afraid."
John 14:27

2 comments:

  1. Praying for you, the doctor, and of course, Ben. love you.

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  2. I don't know you personally, but I have had a heavy burden on my heart for this little man, you, and your family. I have said constant prayers, watched the video you posted and cried at the poor children who suffer this! I read your blog daily for updates and the hopes to hear good news. I placed your family, Ben (called his name specifically) and the doctors on our prayer list at church last night. You're an amazing mother to continue to have the faith and strength to continue on. God gives us only what we can handle and I believe he will heal Ben, even if it is in HIS time. I thank God for my healthy children and pray that he gives you the same and you see progress in Ben.

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